What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

This Week in HD History: Huntingtin Aggregates

One of the telltale signs of Huntington’s disease is the clumps of huntingtin protein that build up all over the brain. It’s a bit like what would happen to a city if the garbage collectors went on strike. But until the discovery of the HD gene and the development of ways to visualize huntingtin protein, there was no way for researchers to see this pile-up of trash. In late September of 1997, a group of scientists at Massachusetts General Hospital published a paper that actually contained images of mutant huntingtin clumps – called aggregates – in brain tissue that had been donated by the families of HD patients after their deaths. You can read the paper’s scientific abstract (a summary) here. It was an important step towards understanding that the buildup of huntingtin protein in the brain could be toxic – and this is the idea behind all of today’s huntingtin-lowering approaches. Author Dr. Neil Aronin serves on HDSA’s scientific advisory board, and HDSA continues to support researchers under the training of Dr. Jean-Paul Vonsattel.

HD Legacy: Brain Donation for HD Research

Speaking of monumental discoveries made possible by HD families, HDSA is collaborating with CHDI to support the donation of brain and other organs to enable cutting-edge Huntington’s disease research. A brain donation is an extraordinary gift in the name of science and medicine that can contribute to the greater knowledge and the greater good of the HD community.

This new program, called HD Legacy, encourages the donation of brain and other tissues from HD gene carriers, at-risk individuals, and healthy family members. The Harvard Brain Tissue Resource Center (HBTRC) will assist interested families throughout the process. Families will bear no costs associated with the donation, all conversations are confidential, and the commitment is non-binding.